The Lions - Hear Us Roar

Sunday, October 24, 2010

I was invited to speak at a local Lions meeting. Tomorrow is the day.

The Lions club has long been known for their involvement with eyesight and providing glasses to those in need. Many groups are getting involved with JDRF and working to help us fight diabetes.We welcome their support!

I am only speaking for 20 minutes. How in the world can I convey to them everything I need to in 20 minutes? It's just not enough time. To explain what diabetes is. What's it's like. What it does. But I'm going to try. (I'm SURE it's way too long...)

Here's my message...

Our journey with Type 1 diabetes began on April 27, 2009. The previous winter, Sweetpea was sick with everything you can imagine. Stomach flu, strep throat, scarlet fever, and a weird "virus" that caused her white count to hit the roof.

Around Spring Break is when we started noticing symptoms. Sweetpea was soaking through her diaper at night. She had NEVER done this before. She was drinking more than usual. We went to Florida for Spring Break and the clothes we got her to wear there were way too big. But they had fit when we bought them. I remember sitting on the couch down there and asking, "Should I be worried about diabetes?"

I knew. I had a feeling. We kept looking up symptoms of diabetes online. She had some but not all. So we kept explaining away the symptoms like so many people do.

April 25th was the first warm day of the year. We decided to make a special day of it and go to the zoo. We stopped at Tim Horton's to get donuts and orange juice. Later, I would kick myself. We could not have served her a worse breakfast. Our time at the zoo was miserable. She was grouchy. Uncooperative. She wouldnt walk. She cried. She said she was hungry and then wouldnt eat. Later that night, she threw up.

She had no fever, so we thought it might be the heat. But I had a sinking feeling it was more.

The next day we went to the park. Sweetpea wouldn't play. We carried her around until she said that she just wanted to go home. She was extremely lethargic. That night J and I went to our bible study and Mom and Dad watcher her. Mom called soon after we left and said that something was not right and we needed to come home.

We got home and Sweetpea was in her crib. She was rolling around and moaning in pain. She had been really thirsty and downed a couple of glasses of orange juice. Soon, she threw up. This was just the excuse we needed to take her to the doctor.

At the doctor the next day, they weighed her. She was 25 pounds. She had been 28 pounds at her well check a few weeks earlier. I felt my heart drop into my stomach. I knew that this was not good.

I explained my concerns. The doctor thought it was the flu. I expressed concern about her weight loss. He thought it was due to the throwing up. I pushed harder. He said he didn't think it was diabetes. She "looked too good" but it was an easy test and they could get the answer right away.

The nurse came in and pricked her toe. Sweetpea cried and cried. A few minutes passed and the nurse came back in and said there was a problem with the machine and they needed to do it again. I knew then. They pricked another toe. She cried even harder.

Then the doctor came back in and told us that our daughter, our child who had just turned 3 years old, had diabetes. We would need to pack a bag and get to the hospital right away.

We spend a week in the hospital getting her stabalized. Sweetpea was in DKA (diabetic ketoacidosis) - a life threatening condition. In the hospital, they taught us how to care for her and keep her alive.

Type 1 diabetes occurs when the body's immune system attacks and destroys beta cells in the pancreas. Beta cells normally produce insulin, a hormone that helps the body move the glucose contained in food into cells throughout the body, which use it for energy. But when the beta cells are destroyed, no insulin can be produced, and the glucose stays in the blood instead, where it can cause serious damage to all the organ systems of the body.

For this reason, people with type 1 diabetes must take insulin in order to stay alive. This means undergoing multiple injections daily, or having insulin delivered through an insulin pump, and testing their blood sugar by pricking their fingers for blood many times a day. People with diabetes must also carefully balance their food intake and their exercise to regulate their blood sugar levels, in an attempt to avoid hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life threatening.

While insulin allows a person with type 1 diabetes to stay alive, it does not cure the disease, nor does it prevent the development of serious complications, which can be many and varied. High blood sugar levels eventually damage blood vessels, nerves, and organ systems in the body. Among the potential complications of type 1 diabetes are: * Cardiovascular Disease* Kidney Disease* Nerve Damage* Amputations* Blindness* Retinopathy* and a life expectancy that is around 10 years shorter than the average person

40 children are diagnosed with Type 1 every day in the US.

After leaving the hospital, Sweetpea was on MDI therapy - or multiple daily injections. She had 5 shots a day. Every day. For 6 months. If she wanted to eat between meals, she had to get another shot. This was a horrific experience for all of us. She would fight, kick, scream, and beg us not to hurt her with each and every shot.

Finally, we got an insulin pump. Sweetpea wears an insulin pump in a little pouch that she wears around her waist. The pump has the insulin in it. The insulin travels through a tube that is connected to a "site" where a thin cannula has been inserted under her skin. The insulin travels through this and into her body. She receives a basal rate of insulin all day long. Then, when she eats, she get more insulin for food. She wears her pump 24 hours a day - only taking if off for baths. We change her site every 3 days.

In order to know how much insulin she needs, we count every single carbohydrate that she eats. We then do a mathematical formula to determine her dose.

We also check her blood sugar around 10 times a day - including at least once or twice a night. No, we have not slept in year and a half! Her poor little fingers always look dirty. But it's not dirt. It's hundreds of tiny holes. If her blood sugar is too high, she gets extra insulin to bring it down. If it is too low, she needs fast acting sugar - like juice - to bring it up. High blood sugar can result in complications over time or in DKA. Low blood sugar is more immediately dangerous. A low blood sugar can result in a seizure, passing out, coma or death.

People with Type 1 can eat candy and sweets. They just have to take enough insulin to cover it. They can play sports. They can have children. They can lead very active and healthy lives. It's just not easy.

People with Type 1 can not control the disease through diet alone. They MUST inject insulin. Although people with Type 2 diabetes can take a pill, Type 1's can not.

There is no cure for Type 1. She will not grow out of it. No one know what causes it.

We DO know, however, that it is not caused by eating too much sugar. Or by obesity.

Regardless of what the media says. Saturdays paper had an article about diabetes that listed the ONLY risk factor for type 1 as obesity. THIS IS NOT TRUE.

And this could possibly be one of the most frustrating aspects of this disease. The majority of the population does not understand Type 1. They think that our kids ate too much sugar. They think that we caused it. They think that it's easily controlled. They think it's no big deal.

It IS a big deal.

People always ask me how Sweetpea is doing and if her diabetes is under control. I don't know how to answer that.

We do everything we are supposed to do - and more. We are constantly changing ratios and basal rates. We are constantly tweaking something. And Sweetpea still battles low and high blood sugar on a daily basis.

I learned early on that you can MANAGE diabetes. But you can never control it. Control is just an illusion.

We may get a few good days. But then something happens and we need to make changes again. We can never relax. Because lows and highs happen - with no warning.

The diabetes community was rocked last week with the news that a 13 year old girl had lost her life to this disease. She went to bed healthy. And she didn't wake up. Hers was the fifth death this year from Dead in Bed Syndrome. It's described as when a healthy person goes to sleep and is found in an undisturbed bed in the morning and their is no known cause of death.

No child should be afraid to go to sleep because they fear not waking up.No child should endure the endless injections, finger pricks, site changes, and hospital visits that diabetes requires.No child should be forced to sit and watch their friends play while they are sidelined with a high - or low - blood sugar.No parent should stare their child's mortality in the face on a daily basis.

This why we need a cure. This is why we so desperately need your support.

I'll end by sharing with you a quote from the Diabetes Research Institute's Tom Karlya (only changing it to reflect US).

"A year and half ago, Sweetpea was diagnosed with diabetes. I have 2 choices: To tell you that Sweetpea lives with DIABETES; or to tell you Sweetpea LIVES with diabetes. I choose the latter. She is an amazing child to whom the words 'no' and 'can't' do not exist. My promise remains, Baby, I'll stop when you have that luxury---and not 1 minute before. ♥."

So I do think this is greatButI can't read it without sobbing.It's coming up on our one year anniversary and I still remember all the signs, the worry, the fear, everything and here I sit crying knowing that you and your family went through it all, too. I can't sleep and what do I do but read more about diabetes. It has been my life for a year now...from when I first feared it to today. Thanks for being so brave to share this and educate others.

YOU ARE AWESOME!! If you play this music in the background along with your powerful words, you will have the room in tears....I am and I already KNOW this story all too well :) I'll be thinking of you tonight.

What a well thought out, brilliant speech! Thank you for advocating for all of us! You will do a wonderful job, and if you cry...that is OK...diabetes is sad. Talking about it all is sad. Showing your feelings will only make the impact of what you are saying stronger. Good luck! You're going to do great!

I know you will do or did great - - - you may have already given the speech. I'm a little behind on reading blogs. You are such an inspiration. I don't think I have it in me to educate as well as you do. Thank you for all that you do.

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* Disclaimer *

I am not a doctor. I just play one in real life!

I am happy to share with you what works (and what does not) for us as we do battle with Diabetes. However, keep in mind that this is just my opinion and should, in no way, be taken as professional medical advice.

Please contact your doctor or endocrinology team before changing your current treatment.